Feeling flustered. Is this even working. Yes I'm whining I'm sorry. Do you or did you ever question you dx. I've been on plaquinel for year at 400mg and aspirin for the same length of time. This was prescribed for the petechia and purura and the dx of APS. New rheumy added cellcept after the dx do SLE and nephritis. I've been increasing my cellcept since Dec as of today I am to increase to 2000mg a day.

A few days ago I woke up with spots on my hip this is where they started. You can see scars from the biposies and they are always around those scars. Random ones on my under arms as well. Now this morning I wake up to even more. This patch is closer to my spine. The past few days I have been very tired and have been feeling muscle fatigue. Like just blow drying my hair my arms feel like they weigh a 100 lbs.
my jaw has been hurting as well. I have no idea if its related to anything or not. It is hard to open my mouth full range. I feel it in my ear.

I had a blood draw yesterday things looked good hence upping the cellcept. I did notice my WBC even though in range is on the low side and my eosinophils were high higher then the in range. Obviously the dr wasn't concerned but I have never had issues with WBC. My RBC, hemoglobin, and hematacrit have always been high higher then the normal range. Still those are high. I'm wondering if its the cellcept doing its job. Probably. I just don't see it or feel it.

I find it alarming to wake with purple spots on my body. I want it to stop as this symptom is what made my drs go into action finally. No clear answers from my biposies just more and more pills thrown at me. Thanks for letting me vent. I just needed to get it off my chest. Not sure what I'm looking for as I know there isn't a magic answer. As many of you know and deal with already its so hard to find people who understand your fears and frustration. My very best friend has almost shunned me. The last time I talked with her I felt myself forcing this happiness out of me that was fake but didn't want to dump my SLE woes on her. Seriously I have talked with her once since my dx. I was like everything is so great. Yhea right.

I wish I could wake up tomorrow and it would just be gone!

debbie-b

03-15-2013, 11:45 AM

Sometimes we all have to vent. I am sorry you are feeling so blah.
Hope you feel better soon.

Debbie

Nonna

03-15-2013, 01:50 PM

Oh I'm right there with you. I just could just cry and scream right now. Every time things seem to be better and I can put my life in some semblance of order......... Bang!!!!!! The nastiness is back full force!!!!!!!!!

Hope things start to go good for you,
Hugs

tomcatsgirl

03-15-2013, 03:04 PM

Sometimes it's nice to just write it down and know someone is reading it. I could talk aloud to myself lol but then I would be crazy.

cma

03-16-2013, 12:46 AM

im sorry that you are going though this :( Hugs from me to you. vent all you want!!

tgal

03-16-2013, 11:27 AM

That is what we are here for. Vent away! We all hit this place. The healthy people around us don't understand. Even the ones that try don't get it and then some of us have those that say "you would feel better if you just came off all that medicine". Yeah, that would kill me but maybe I would feel better!

Anyway, that is why we have our WHL family. This family understands what we are going through and what we feel like. This one "gets it" when we need to vent so just feel free. We love you and are always here.

jmail

03-16-2013, 12:58 PM

Really gentle (((hugs))) for ya tomcatsgirl. Watch any rash closely, and don't let it get out of hand.

Kjell

03-16-2013, 07:46 PM

Im sorry your having a hard time. I can so relate to this post. Especially the friend part. Im very new to lupus, an having my first real flare. So I cant promise you everything will get better soon.. But being on here talking to people does really seem to make things easier. I hope you get to feeling better soon.

rob

03-17-2013, 09:23 AM

Hi Tomcatsgirl,

I think most of us have experienced feelings like this, I know I certainly have, and more than just once. There are so many things about Lupus that are just downright frustrating and discouraging.

Remember, it's not a pity party if you have legitimate concerns and complaints. I think you have some very legitimate concerns and complaints. There's no apologies needed for venting those frustrations.

Hang in there,

Rob

tomcatsgirl

03-17-2013, 12:20 PM

Thank you all so much for your kind words and validation. I do go about my days and I go to work ect live my life, with a side of lupus. Feeling un well is not knew as you all know. The dx of lupus is relatively new since Nov. I was so relieved to finally have answers and now I'm finding myself sort of angry/bitter that this is not gonna go away. Controlled yes getting there is the downer. I know in time I will get there just some days it just overwhelms you. As many of you can relate to taking so many pills. My DR will change it once I'm okay with the dose but currently I am at 14 pills a day. I find it absurd. Every time I pop them in my mouth I get mad. Silly maybe but still the anger is there. Once she adjusts the cellcept it will eliminate so many pills. Currently it's 250 mg 4 pills twice a day then add everything else on top of it. It will eliminate 4 of them at least. 10 is better then 14 right!

Again thanks so much for listening/reading. Somedays you just got to get off your chest. I do love my life would love it more without lupus but so would all of us. I just have to remind myself it could be a heck of a lot worse. I still enjoy my hobbies my life has not ended. Adjusting things and not pushing myself just listening to my body I am getting better.

tgal

03-17-2013, 01:07 PM

I just want you to know that you are not alone at the "pill anger". I have been there myself sever times. Many of us have. We know we need them and we know it is kind of silly but dang it they are a reminder every time you have to get them out. It's another one of those things healthy people can't understand but it made perfect sense to me.

you are completely normal if that makes you feel any better :)

rob

03-17-2013, 01:54 PM

I just want you to know that you are not alone at the "pill anger". I have been there myself several times.

I think for many people the "pill anger" comes from the fact that Lupus is an elusive enemy with no physical or tangible form. Fighting with Lupus is like boxing with your own shadow. No matter how fast you throw a punch, your blows never connect.

On the other hand, the meds we take are a constant physical and tangible thing we can look at and hold in our hand. I'm generally one of the first people to tell others that you need to take your meds consistently, and as directed.

However, I'd be a liar if I said I never took out my anger and frustration on one of the only aspects of Lupus that I can actually see and hold in my hand. I've thrown Prednisone out of the window on the way home from the pharmacy, and I've flushed more than one bottle of Plaquenil down the toilet at 2am on yet another sleepless night out of sheer frustration and anger.

Needless to say, it's certainly not something you want to make a habit of doing, but if "Mr. Take Your Meds" can end up being pissed-off enough to do this, anyone can.

It's nothing to be ashamed of.

Rob

lucky7

03-18-2013, 12:00 PM

Ya know, its been proven that holding ANY emotion in is BAD for our health. Talking about it and/or writing about it is so IMPORTANT no matter WHAT. NO THING in our lives is trivial if its making us feel OOKY in any way. LET IT OUT and FEEL BETTER after! Thats what friends are for! Just like the song by Dione Warrick (gosh, i probably spelled that wrong, SORRY if i did Dione! LOL) WOO HOO to VENTING!!!!

tomcatsgirl

03-18-2013, 12:42 PM

Love this site! I hope to contribute as you all have for me. Today is a good day.

rob

03-18-2013, 01:06 PM

Love this site! I hope to contribute as you all have for me. Today is a good day.

Glad you are having a better day!

lucky7

03-18-2013, 01:09 PM

Here's to GOOD DAYS! WOO HOO for THAT!!!! This site LOVES YOU too!!!!!